During the global pandemic, we count the numbers of hospital admissions. Of respirators. Of deaths. Days of quarantine. Days since our last morning swim.
We count how many armfuls of laundry we do at dawn. We count how many dishes we wash, how many toilets we clean. After all, home is the only sacred space remaining where we live unmasked, where smiles are exposed.
We count the number of rolls of toilet paper or paper towels in our storage closet.
Sitting in silence, wondering why suddenly they have become so precious a commodity.
We count the money we have lost in a fragile economy that is both volatile and on pause. All but what is “essential” is shut down, instructing us to redefine what is indeed indispensable.
We have learned the power of decelerating—the vulnerability of hurry.
We have been changed. Marked like Cain after Abel’s murder. Indelibly.
During the pandemic, superimposed on my young daughter’s chronic illness, Ehlers Danlos Syndrome, I am counting so many things. Yet, I have lost track of time. Pandemics wipe out not only individuals but also our capacity to record time. Disoriented each dawn, I wash up and catch the blue of my eyes in the mirror that twins the blue of my daughter’s eyes—some of my features, timeworn versions of hers. I learn from Elly each day, “Time not in pain” is the precious currency. I forfeit the need to sequence the hours but, instead, appreciate the moments unscathed by ache.
If my daughter’s pain is not crippling due to an unprovoked dislocation, we walk, knowing each stride is a gift. Her syndrome does not let us forget.
I identify with the mother in the pediatric palliative care unit who tells the doctor during the pandemic: “Welcome to my world.” I now live the way I have been conditioned to live with my resilient daughter before corona was given global reign. Limited. And yet not. We live for today. I function as the “brace for her soul,” even if I am powerless as a physician-mother to maintain the integrity of her body.
On rare mornings when Elly awakens from a deep slumber with sufficient REM sleep, she is smiling, proud of her sleep quality. Grateful she didn’t dislocate her shoulder when she rolled over in her sleep and that her wayward GI tract is cooperating. Morning is when her body functions optimally. She instructs me “one day at a time,” otherwise known as “Elly time,” is holy.
The precariousness of her body mirrors the precarious sentiment felt by so many due to the pandemic. There is nowhere to escape. Tomorrow cannot be anticipated or planned. That is precisely how one lives with a chronic illness. The world has joined our ranks.
Elly finds refuge in an infrared sauna blanket while listening to a meditation app to enhance its impact. Sits on an exercise ball in front of photo-biomodulation therapy, quelling nerve pain. She self-injects peptides praying for a panacea, and lies supine on ice packs when needed. During the pandemic, she zooms with her physical therapist, who has become her closest ally while quarantined by Ehlers Danlos Syndrome compounded by the coronavirus.
When I go to her room to say goodnight, knowing she cannot have children of her own, she says, “Mom, I will pay your love forward to others in my own way. I promise.”
I close my eyes, acutely aware of a miracle.
We read aloud The Year of Wonders about the Bubonic plague in the 1600s. Words are our life raft. She cannot hold a book on her own. I read it aloud. She listens attentively, hoping to escape into someone else’s story.
At night I have to turn the noisemaker on high to drown my sorrow. I mourn for what once was an innocent young girl with wide blue eyes, white-blond curls in red glitter Mary Janes. I mourn what could have been. There is no silencing the sadness. It is too deep. Like darkness. Too loud. Like thunder. Sudden and unwelcome.
The heavyweight of my gravity blanket is essential to still my body and my mind
to facilitate sleep. My daughter’s suffering intrudes on my dreams. I try to hide.
There is no escape when your child is in pain.
As the potency of the coronavirus appears to taper, reentry is imagined. I envy the world outside the perimeter of my home in which my husband and I dwell with a daughter inflicted with cascading limitations from faulty collagen due to one minor flaw in her otherwise impeccable genome. Together we live in a quarantine imposed by EDS so much more severe than that imposed by the virus.
My husband, Elly, and I, however, do not dream about reentry. Jailed by my daughter’s pain and disability. The summer sun sneaking through her bedroom curtains is an unscrupulous tease as I lay by her side and read to her Baldwin and Flaubert. The bright star’s radiance, a painful reminder of all we cannot access.
I am learning from my daughter to distill what remains. Her resilience buoys my own.
I walk with Elly and note the daffodils are bowing their heads on this grey afternoon. Perhaps they are ashamed to be spectators to a plague.
Corona may not be a direct threat to them, yet they bear witness.
The yellow of the daffodils is fading fast. Just yesterday, they were upright and vivid in hue. Today, their posture bowed. They appear pale. Perhaps the daffodils are a congregation praying.
I take deep breaths in bed, lying parallel to my daughter’s body, my hand on the soft pajama of her thigh. The meditation app instructs us to hold on to the breath. And to let it go. I listen to the quiet, harmonious chorus of our inhales and exhales as I hold onto my precious daughter. And let her go.
Perhaps, that is all of life. The relentless blossoming of flowers in the spring, their stunning hues, yet the flora know full well they will be forced to fade in color, relinquish the vital connection to the solitary stem that sustains them.
Corona instructs each of us that to breathe is an art. To hold on and to let go: a gift.
I learn from my daughter. For more than a decade before corona was crowned “king,” limitations imposed upon her small frame were seemingly infinite. Yet, her resilience equally immutable. Something I count on.
She, like the daffodils, reminds me each day: Redemption is possible.
Karin Charnoff-Katz is a radiologist.
Image credit: Shutterstock.com